No Soliciting Please
Now, let me just clarify that I am NOT against you doing something that makes YOU feel better, and even sharing that knowledge with others. That’s not what ‘ticks’ me off.
The pushy people
It’s the ‘pushy people’ that annoy me. Mainly those people that do NOT have Multiple Sclerosis or a similar illness… that are trying to get us to ‘try this out’, etc. You may recall that I have written about this before, in “Calling Y’all Out”… but this is just something that I have to deal with continuously and I need to just get it off my chest.
I’ve had people tell me that they ‘know’ someone with MS, that really benefited from this certain vitamin, diet, etc. That’s awesome, thanks for sharing. But is this just hearsay? I mean, have you talked to the person that it benefitted? Can I talk to them? How do I know that they actually have MS to begin with?
Where is the data?
There are so many questions that go un-answered on this topic. One of the main questions that I like to ask people who ‘inform’ me about what they ‘found’ is, “Where is the scientific data that shows this helps?”
Now, I’m not going to sit here at all, and say that trying things out is wrong… Or that no one with MS wants to even try it out. But it’s the approach that counts. I mean, are you just trying to sell me something? Or are you really concerned about my Quality of Life (QoL)?
I’m not going to be negative here and say that all things suggested for alternative treatments aren’t beneficial because that would be false. I know people that have used alternative therapies to help manage their MS symptoms and it worked really well for them. But the thing that needs to be considered here is that MS is known as the “Snowflake” disease. No two patients are the exact same… so we don’t all respond well to the same thing. That’s the reason why there are now numerous different Disease Modifying Therapies available for MS patients.
Do what you feel is right
I tell people that have MS, you do what you feel is right. Talk to your neurologist about it, your healthcare team, your friends and family; don’t make a hasty decision. Me personally, I wouldn’t just stop taking my Disease Modifying Therapy, to use a supplement and/or diet in its place. Why? Because I’ve tried to manage my MS that way before, when I was on a ‘break’ from medication… waiting for Tecfidera to be approved by the FDA. Bottom line, it didn’t ‘manage’ my MS as well as the treatment options available do.
You also have to keep in mind that there isn’t just one stage of MS… there are multiple. However, only Relapsing-Remitting MS (RRMS) has medication approved by the FDA for use to help manage the disease course. So when you hear about how certain ‘things’ helped improve someone’s life with MS, was that his or her only option? Are they Secondary-Progressive MS (SPMS) or Primary-Progressive MS (PPMS)? There are so many things that need to be taken into account.
Things that need to be taken into account
Were they just using the alternative treatment or diet? Or were they doing that in addition to being on a MS Disease Modifying Therapy? Do they have frequent relapses, if they are not on a medication? Or is their MS not as ‘aggressive’?
I can make a ‘suggestion’ to those of you who are considering taking a certain supplement, to help with a certain symptom. Discuss it with your Neurologist. That’s something that I do on anything that I consider doing or taking. I want to make sure that it isn’t going to cause any harm to me, and to make sure that I’m doing the best that I can do to manage my MS in the most effective way.
So, does this explain it a bit more? I’m not going to sit here and be Miss Negative Nancy about anything that isn’t pharma-made for MS… but I’m just saying that there are certain things to consider.
For those people who like to suggest things to a friend with MS… there are certain ways to go about it, like I stated previously. Just ask them if they have heard about anyone with MS taking the certain supplement that we can reach out to.
I get very upset/annoyed when it’s ‘pushed’ on me. No, I’m not saying that you are literally peer pressuring me to try something out… but when your statement sounds VERY similar to a car salesman, I’m most likely going to roll my eyes about it. Because if you want me to ‘try something out’ that you personally will make a profit on… that says a lot about WHY you want me to try it out, in most cases.
MS isn't cheap!
I mean, you also have to take in to consideration that living with MS… is not cheap! From insurance, to co-pays, to prescriptions, to specialty pharmacy medications… the list goes on and on, because that doesn’t even include any ER visits that might occur. Let’s face it, MS is VERY unpredictable in it’s disease course.
Also, this is NOT an opening for people to make commentary trying to prove that what they’re doing works or not… this is in regards to the approach of ‘informing’ someone with MS about something you want them to know about… and in most cases TRY.
The delivery changes everything
Something that is important to remember is that one word can really change how something ‘sounds’ or is ‘portrayed’. Example: “You should try this _________! I ‘heard’ it really helps out with peoples MS!” (That one comes off as sales/pushy to me.) Now, if you are really just wanting to ‘inform’ someone with MS about something, you could say: “You could look into ____________. See if you can find out if it helped anyone with MS before.” or “Maybe you could ask your neurologist about _________, to get their opinion on it.”
Should vs. could
See what I did? Sometimes just changing the word SHOULD to COULD – it can make something sound a lot different. So it is coming across as, this is something you could try out, on your own time and not coming across as, YOU SHOULD BUY THIS FROM ME SO I CAN MAKE COMMISSION. Get what I’m saying? I’m not trying to be rude here to anyone (kinda), but you would not believe how many times I’ve heard a sales pitch for this special thing, this certain diet, etc.
Okay, that’s all I’m going to say on this subject again… for now at least. It all just depends on what kind of ‘mood’ I’m in!
“Don’t worry about upsetting someone that is being rudely aggressive to you, because they didn’t worry about your feelings in the first place.” – Ashley Ringstaff
How well do people around you understand MS?